Editor’s note: The last twelve months (and counting) of living during a global pandemic has had an affect on us Spoonies, so I thought I would do a six-week series, asking some of our contributing authors the same questions about how they are managing spoons, one year later.
This week’s featured author: H.E. Casson
SpAN Ed: What impact have these past twelve months had on you? What routines have changed, and did you create new routines?
H.E.: I’ve never been good at routine. My brain operates on its own schedule. By having most of my plans stripped away, save a few, I’ve been able to see that scheduled events heighten my anxiety. I have to choose them carefully. If I plan something three weeks from now and it’s causing anxiety, I’ve set myself up for three weeks of fighting my own brain. A planned, participatory event overrides my whole day. If there’s something I value, I’ll give it a day, but I’m being more selective. At the end of this, I’ll say yes fewer times. I’ll take time to consider before I commit. I would love to figure out my own natural schedule, but I can’t do that right now. This is the blank slate. Afterward, I’ll start learning how to properly fill it.
SpAN Ed: As a creative person, did you find yourself diving into your craft more, or less so? Have you found other ways to nurture your creative mind?
H.E.: Yes and no, in waves. I’ll be able to create for a few months, then have nothing for a few months. I’m being as patient as I can with that. Motivation is hard. I tend to add spoons by being an audience member. I go see other poets read, enjoy a dance performance, see a play. I can’t do that right now. I can’t be part of a circle of creativity. I’ve started a virtual writing group and it’s filled some of that gap, but I miss people. I miss the shared experience of enjoying art as part of a crowd.
SpAN Ed: As a Spoonie, what about life during a pandemic helped you, and what has frustrated you?
H.E.: The answer to both of these questions is the same. I used to blame myself for the ways I’d been neglected and mistreated, but something as simple as wearing a mask is too much for so many people. I can see in a measurable way that the people who live near me aren’t good at community care. It’s retroactively filled in some of the questions from my past. It’s not that I wasn’t worthy of help, it’s that we have created a culture of neglect, hidden behind the facade of Canadian politeness. It’s been a relief to realize there’s no way I could have been a good enough kid to get the help I needed. I wasn’t the problem. I’m frustrated because it’s clear we need to do better. We need to elevate mutual aid higher than personal success. Personal success comes and goes, but supporting mutual aid sets the foundations in place for everyone to survive a crisis, both on a small and large scale.
SpAN Ed: Is there something that you achieved that you’re especially proud of (other than surviving, which is huge)? Remember, there are no “small” wins.
H.E.: I’ve had some poems and short stories published, and any time I’m able to share my work I take it as a win. I have an essay coming out on April 13th as part of the League of Canadian Poets celebration of National Poetry Month. I’m proud of it because the topic was resilience, and I spent a few weeks reflecting on the ways resilience has both helped and hindered me. Writing about resilience while circumstances required so much of it was challenging, but I found a way to say what I needed to say.
SpAN Ed: A lot of people are saying we can’t really return to “normal” post-COVID, but what are some of the things you would like to do again, once you feel safe to venture out into in-person society? Also, what virtual-based activities would you love to keep in place, going forward?
H.E.: I’ve realized the length of an event is the real deciding factor on whether it’s more accessible for me in person or virtually. Shorter activities like a concert or museum visit are better live, but as soon as an event lasts multiple days, I prefer to attend virtually. Conferences were rarely accessible to me because one day would use weeks worth of resources. I can’t remember the last time I went to a location-based event two days in a row. Virtual conferences allow me to pick the panels I want to attend, regardless of the day, rather than having to limit my choices to a single day. I would encourage those planning conferences to retain the digital aspect and price it in a way that reflects the financial disparities between disabled and abled folks.
SpAN Ed: Is there anything else you’d like to share about your experiences?
I was thinking about the fact that most of our current COVID-19 vaccines require two doses. With the first one, our bodies learn about a new danger. Immune cells in our blood are being given a roadmap. With the second dose, we don’t even need the map. Our cells know the way.
I know this experience is different for everyone, but as a disabled person, I felt like I’d been first-dosed against the emotional and practical aspects of a pandemic. I had skills in place that others didn’t. I knew that the response wouldn’t be perfect and that systems would fail us; that people would want to come together and support each other, but that they’d find their ability and energy waning as the situation became more stressful and unending; that there would be folks who threw themselves into helping others, but that number would be small. I also knew there would be folks who thought any small accommodation toward keeping others safe was an imposition. We’ve experienced this when seeking accessibility and protection. Good intentions, without planning and action, aren’t worth much. If this pandemic has shown us anything, it’s that we need to take better care of one another, and it only works if most of us opt in.
Thanks so much for participating, H.E.! It’s always a pleasure to learn your perspective.
H. E. Casson (they/them) is a queer poet and performer whose words have been shared by Cast of Wonders, Lunate, The Quilliad, Serotonin, and Taco Bell Quarterly—among others. They are a Best of the Net nominee and have been selected for the Best Indie Speculative Fiction 2020 anthology. H. E.’s voice can be heard in the Moonbase Theta Out and Disenchanted podcasts. You can visit them and see more of their work at hecasson.com and as @hecasson on Twitter.